Anxiety,  Depression,  Eating Disorders,  Hallucinations,  Obsessive Compulsive Disorder,  PTSD,  Recovery,  Schizoaffective Disorder,  Schizophrenia

Do you get used to having a mental illness?

a concrete path shows the way through a seemingly endless hedge maze.

“I still get nightmares. In fact I get them so often I should be used to them by now. I’m not. No one ever really gets used to nightmares.” – Mark Z. Danielewski, House of Leaves

Do you ever get used to having a mental illness? For some, mental illness can be treated and resolved. For others, it comes and goes. And for the rest of us, it’s life long and it’s just a matter of does it get worse, better, or remain the same. The course is determined by numerous factors like genes, trauma, and whether or not treatment works. The outcome is as unique and individual as we are. Personally, my depression, schizoaffective disorder, and obsessive-compulsive disorder (OCD) stick around like a stain on my brain. But the question is, for those of us who live the better part of our lives with mental illnesses and brain diseases, do you ever get used to it? For me, it’s complicated.

I became accustomed to the darkness and the anxiety.

The depression started when I was young and the feelings and dark thoughts wove themselves into my daily life. I didn’t understand them for years, and they weren’t a constant companion, but they were reliable. I learned to count on anxiety and the OCD compulsions that promised relief and never delivered. Hiding the depression was my way of coping. And I turned my rituals and compulsions into a joke. Humor could take away some of the hurt and embarrassment. But it was because I was so familiar with all of these feelings that I was caught off guard by the new depression that began right before the hallucinations started.

I said something with every unexplainable sound because I wanted to get back to life.

I had prided myself on my ability to act like everything was fine. But with this new, energy-draining depression, that ability was in danger. I spoke up to doctors in an effort to hide my symptoms from everyone else. I continued to tell my doctors every time I heard a snicker from the corner of my room, music with no known source, or footsteps patrolling the hallway at night. At the time, I wasn’t ready to deal with the fact that I was hallucinating. I tried to brush it off. I would tell myself that they would go away and everything would be fine. But my body went cold with every sound I heard.

Despite my silent prayers, they never did go away. Instead shadowy figures followed me and peered around my door at night, paralyzing me with fear. Creatures crawled beneath my skin, leaving me debating the pros and cons of ripping my arms and spine open to free them. Later on, the chatter of voices would keep me up as I tried to fall asleep. And my thoughts would go fluttering away as I tried to catch one in an attempt to piece together my broken train of thought. I suppose the music wasn’t all bad, but it would have been nice to choose when and what track was playing.

The exception was the cat.

It started with the tickle of her breath on the back of my hand. A few days later, I crawled under a desk and came face to face with her – about 2.5 foot tall, fluffy grey cat, sitting there, tail softly flicking, and pale eyes blinking slowly. She emanated calm. She took no getting used to. It was as if she was a part of me the whole time. In a sense, she was.

Chatting with my favorite author, Mark Z. Danielweski, and a close friend of his, pianist Christopher O’ Riley, at a reading, the topic of cats came up. I eagerly described this cat and her soft, slow blinking. Christopher noted that blinking slowly is how cats kiss and say I love you. It was instant confirmation of everything I had felt. Over the years there have even been times that I wished the cat could come to me and offer some kind of solace and light in the darkness I was facing.

Four years into the schizoaffective diagnosis, the shadowy figures still sent a shock of fear through me even though I’d been seeing them on and off for years.

Fear followed me like I was it’s prey. The music was frustrating, but bearable. The worms under my skin and in my spine were borderline unbearable, but slightly less unnerving. I was still learning how to keep up with my thoughts as they spun circles in my head. And I was terrified of the dark and the things that the shadows could hide or even produce. If I was home alone, I flipped every switch until the rooms were lit up like a fallen star. I could talk about my experiences with calm but inside I was coming apart at the seams.

Eight years in, I thought I had it under some level of control.

My stress level had been sky high for years, and I would tell myself that I must be doing well if I wasn’t overly symptomatic. That is, of course, if you leave out the OCD rituals that caused me stress while simultaneously seeming almost normal and a handful of hallucinations. My blood no longer ran cold at the sight or sound of the hallucinations in many cases. They bothered me more after the fact than in the moment. My biggest concern was other people noticing something was “wrong” with me. That and the post-traumatic stress disorder that occupied most of the space in my mind.

It’s been twelve years since my schizoaffective diagnosis.

The hallucinations have been more frequent lately, both visual and auditory. I’m so used to stress that my doctor had to point out that that’s what was triggering the people I was seeing and the voices and sounds I heard. My disorganized thoughts have been worse this year as well. Between the pandemic and the inherent level of stress in my life, I’m not too surprised. But there’s a small concern that burrows in my chest and whispers, “what if this doesn’t get better?”

But do you get used to the nightmares? After 12 years, am I used to having a mental illness? Yes and no.

My hallucinations still bother me. Not only can they light up my anxiety, they also remind me of the stress level that I can’t seem to lower. But while the hallucinations themselves can catch me off guard and frighten me, I’m not surprised that I’m having them. I understand that my thoughts may fly away in any direction, but that doesn’t make it less frustrating when it happens. And my old friend, depression, is not unexpected, though I still feel it’s hollow ache.

I’ve been living with depression since I was a young child and schizoaffective disorder since I was 17. I don’t know what an adult life is like without them. It’s a concept so foreign to me that it’s hard to imagine. But I also try to avoid dwelling on what life could have been like without all of this. I still get bitter sometimes, sure, but I’m happy just to be living because there are some who can’t. I’ve become accustomed to the presence of my symptoms, but it I don’t think I will ever get used to the emotional and visceral reactions they ignite in me as they dance across triggers in my mind. I don’t know if anyone does.



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